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Re: bad news for Grace from Dr. Frick appt.

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Posted
Posted

Oh wow , what a difficult thing for you and Grace to have to go

through. I don't know what to say because I have no idea about all

this. I would be angry too. Have you consulted with Dr. P. about

this? Is he one of the docs that has said wait and see? And have you

talked to him about this situation and Dr. Frick's plan yet? I'm curious

what he would say, perhaps he wouldn't say wait and see and agree with Dr.

Frick? Did Dr. Frick say a cast or two wouldn't do anything or is it worth

a try? Could it be a bad thing to cast? I'm just asking, because I have

no idea how this all works.

I found your information about toe walking interesting because my oldest

does this a lot. I remind him to heel toe it all the time but he walks on

his toes whenever I'm not telling him to be conscious of it. He doesn't

have any orthopaedic problems which would cause him to do this so I'm

hoping it works itself out but I didn't know it could cause other problems

either. Food for thought... thanks.

Kori

At 08:43 AM 12/1/2004, you wrote:

>Here is my update on Graces appointment yesterday. For those that

>are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

>below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

>unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

>was 6/7 mos. She received 2 additional casts then a second tenotomy

>was performed on her right achilles(first had been done too early;

>before her feet were corrected) and a first was performed on the

>left. Went home started braces 24/7 as advised. Had problems after

>less than a month in them. Sent pics. to Iowa and were advised by

>Dr. P. to go to night time only and to turn down the degrees of

>rotation to about 55 due to very loose ligaments. So we did. We

>continued to have issues with Graces feet and all along feelings

>that something was just not right. To be honest her right foot

>looked terrible......loose joints, late walking, foot dragging,

>falling, then last year Rocker bottom. So now here I am a year later

>back from seeing Dr Frick yesterday with news that Grace has had

>rocker bottom for quit some time. Looking back at very early

>pictures it appears that it was there all along for the last 2.5

>years. Her heels have never came down. Xrays taken yesterday show

>her right heel is way up from where it should be. Her left is up as

>well, but not so much. Xrays taken last Jan. show rockerbottom too.

>So pretty much she has been using only the front of her foot when

>walking and mostly the middle which is why rockerbottom causes

>a " breakdown " of the mid foot. So to make a long story and

>appointment short she needs a posterior release for sure on the

>right and possibley on the left as well. I was told also that Dr

>Ponseti usually is not concerned w/rockerbottom and has advised Dr

>Frick to " wait and see what happens as the child walks on it for a

>while " . I was told that is probably what Dr P would advise me at

>this time. But Dr Frick feels Graces foot would be unuseable later

>in life if left like this. I feel this way too because I have had to

>sit and watch it get worse over the past year and am quite honestly

>upset I followed several Drs advice to do so. If at the age of 3 a

>child is having major problems why would anyone think that this is

>okay to leave alone?? I know so many of you here have listened to

>me over the last two years post of my concerns and issues with

>Grace. I have posted alot of pictures and got alot of " WOW "

>something is definetly not right........and it just seems to me that

>something should have been done by now. I am honestly a bit angry.

>I did go to Drs that were recommended. I did what I was told. I

>really feel like because Graces case was not the " norm " for the

>Ponseti method people were afraid to do anything. It really hurts

>that I see so many other babies with new problems and people are so

>eager to find a solution or to invent new ways to help them. Maybe

>I am over reacting but why was nothing done for MY child?

>Dr Frick also feels Grace does not have cerebral palsy which for a

>while was thought to be the cause of Graces foot dragging. So after

>a very long phone consult. with a gait specialist Grace is to see in

>Jan to determine why her foot is dragging I was told that because

>Grace was forced to walk improperly she probably has alot of

>symptoms that are resembling Cerebral palsy. Alot of CP children

>toe walk because of achilles tightness. (tight achilles also causes

>the heel to not drop which also causes rocker bottom) Toe walking is

>undesirable because it causes hip problems, shortens the achilles

>even more, causes shortened bones on the affected side, stiff joints

>from constant muscle contraction (walk around on your toes all day

>and see how your muscles feel.) Well not surprisingly Grace has all

>of these problems and they are all getting worse. So I guess for

>her case surgery cannot be avoided. Yes, we DID use the DBB

>religously!! Yes we did exactly as told and we even saw the best.

>So, I guess thats my update. Not really what I wanted to hear; but

>definetly better than being told she is fine and to sit and wait and

>see if things get better. It is what I kind of felt needed to be

>said, but still hard to hear! There was no mention of trying a

>couple casts to see if things could be corrected that way. So, Dr

>Frick said for me to call him when I decide I want it done. I think

>I will wait until after Christmas and on the brighter side at least

>it is winter and the casts after surgery will help keep her legs

>warm. And hopefully the surgery will not just help her feet

>function better but everything.

> and Grace

>

>

>

>

>

>

>

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Posted
Posted

Oh wow , what a difficult thing for you and Grace to have to go

through. I don't know what to say because I have no idea about all

this. I would be angry too. Have you consulted with Dr. P. about

this? Is he one of the docs that has said wait and see? And have you

talked to him about this situation and Dr. Frick's plan yet? I'm curious

what he would say, perhaps he wouldn't say wait and see and agree with Dr.

Frick? Did Dr. Frick say a cast or two wouldn't do anything or is it worth

a try? Could it be a bad thing to cast? I'm just asking, because I have

no idea how this all works.

I found your information about toe walking interesting because my oldest

does this a lot. I remind him to heel toe it all the time but he walks on

his toes whenever I'm not telling him to be conscious of it. He doesn't

have any orthopaedic problems which would cause him to do this so I'm

hoping it works itself out but I didn't know it could cause other problems

either. Food for thought... thanks.

Kori

At 08:43 AM 12/1/2004, you wrote:

>Here is my update on Graces appointment yesterday. For those that

>are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

>below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

>unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

>was 6/7 mos. She received 2 additional casts then a second tenotomy

>was performed on her right achilles(first had been done too early;

>before her feet were corrected) and a first was performed on the

>left. Went home started braces 24/7 as advised. Had problems after

>less than a month in them. Sent pics. to Iowa and were advised by

>Dr. P. to go to night time only and to turn down the degrees of

>rotation to about 55 due to very loose ligaments. So we did. We

>continued to have issues with Graces feet and all along feelings

>that something was just not right. To be honest her right foot

>looked terrible......loose joints, late walking, foot dragging,

>falling, then last year Rocker bottom. So now here I am a year later

>back from seeing Dr Frick yesterday with news that Grace has had

>rocker bottom for quit some time. Looking back at very early

>pictures it appears that it was there all along for the last 2.5

>years. Her heels have never came down. Xrays taken yesterday show

>her right heel is way up from where it should be. Her left is up as

>well, but not so much. Xrays taken last Jan. show rockerbottom too.

>So pretty much she has been using only the front of her foot when

>walking and mostly the middle which is why rockerbottom causes

>a " breakdown " of the mid foot. So to make a long story and

>appointment short she needs a posterior release for sure on the

>right and possibley on the left as well. I was told also that Dr

>Ponseti usually is not concerned w/rockerbottom and has advised Dr

>Frick to " wait and see what happens as the child walks on it for a

>while " . I was told that is probably what Dr P would advise me at

>this time. But Dr Frick feels Graces foot would be unuseable later

>in life if left like this. I feel this way too because I have had to

>sit and watch it get worse over the past year and am quite honestly

>upset I followed several Drs advice to do so. If at the age of 3 a

>child is having major problems why would anyone think that this is

>okay to leave alone?? I know so many of you here have listened to

>me over the last two years post of my concerns and issues with

>Grace. I have posted alot of pictures and got alot of " WOW "

>something is definetly not right........and it just seems to me that

>something should have been done by now. I am honestly a bit angry.

>I did go to Drs that were recommended. I did what I was told. I

>really feel like because Graces case was not the " norm " for the

>Ponseti method people were afraid to do anything. It really hurts

>that I see so many other babies with new problems and people are so

>eager to find a solution or to invent new ways to help them. Maybe

>I am over reacting but why was nothing done for MY child?

>Dr Frick also feels Grace does not have cerebral palsy which for a

>while was thought to be the cause of Graces foot dragging. So after

>a very long phone consult. with a gait specialist Grace is to see in

>Jan to determine why her foot is dragging I was told that because

>Grace was forced to walk improperly she probably has alot of

>symptoms that are resembling Cerebral palsy. Alot of CP children

>toe walk because of achilles tightness. (tight achilles also causes

>the heel to not drop which also causes rocker bottom) Toe walking is

>undesirable because it causes hip problems, shortens the achilles

>even more, causes shortened bones on the affected side, stiff joints

>from constant muscle contraction (walk around on your toes all day

>and see how your muscles feel.) Well not surprisingly Grace has all

>of these problems and they are all getting worse. So I guess for

>her case surgery cannot be avoided. Yes, we DID use the DBB

>religously!! Yes we did exactly as told and we even saw the best.

>So, I guess thats my update. Not really what I wanted to hear; but

>definetly better than being told she is fine and to sit and wait and

>see if things get better. It is what I kind of felt needed to be

>said, but still hard to hear! There was no mention of trying a

>couple casts to see if things could be corrected that way. So, Dr

>Frick said for me to call him when I decide I want it done. I think

>I will wait until after Christmas and on the brighter side at least

>it is winter and the casts after surgery will help keep her legs

>warm. And hopefully the surgery will not just help her feet

>function better but everything.

> and Grace

>

>

>

>

>

>

>

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Posted
Posted

,

Sorry about Grace's news. Have you thought about getting another opinion

from Dr. P again? It couldn't hurt anyway. It does seem frustrating when

you think they could have just fixed the rockerbottom earlier, but in the

slight chance it could have corrected itself in that years time, you could

have possibly avoided surgery. And unfotunately, you never know until you

wait it out sometimes. In Grace's case, waiting it out didn't change

things but at least you don't have the burden of second guessing yourself

if you had the surgery a year ago. I think they were looking out for the

best interest for Grace, even though it doesn't feel that way now.

Hang in there, you have made the right choices thus far.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

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Posted
Posted

,

Sorry about Grace's news. Have you thought about getting another opinion

from Dr. P again? It couldn't hurt anyway. It does seem frustrating when

you think they could have just fixed the rockerbottom earlier, but in the

slight chance it could have corrected itself in that years time, you could

have possibly avoided surgery. And unfotunately, you never know until you

wait it out sometimes. In Grace's case, waiting it out didn't change

things but at least you don't have the burden of second guessing yourself

if you had the surgery a year ago. I think they were looking out for the

best interest for Grace, even though it doesn't feel that way now.

Hang in there, you have made the right choices thus far.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

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Posted
Posted

I am very sorry to hear the disappointing news, but atleast you can

be thankful that now you know what needs to be done and you can do

it. I think that is half the battle, knowing what to do. You know,

I think we all trust the doctors to do what is best for our

children. We all believe (to some extent) what they tell us and

think that they know what they are talking about. We are in a

similar situation (a relapse) with Jordan's feet and I know how you

feel. I guess that we will be casts together this winter.

(Jordan's appointment with Dr. Frick is Monday.) I can't blame you

for being pissed. I would be too. You're a mommy and that's your

job. Just know that atleast now you can work towards correcting her

feet and providing her with the best feet and life that you can

possibly provide. You are a good mommy!! Grace is lucky to have

you. Good Luck!

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday

show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom

too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable

later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite

honestly

> upset I followed several Drs advice to do so. If at the age of 3

a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are

so

> eager to find a solution or to invent new ways to help them.

Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also

causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear;

but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at

least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

,

I'm so sorry that you've been given such disheartening news.

I can understand your frustration!

Please keep us posted- we're here to support you!

& (3-16-00)

left clubfoot

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Posted
Posted

,

I'm so sorry to hear your news I know it must be hard for your

family right now, especially since you suspected something was wrong

and took Grace to who you thought was the best. I hope things get

better quickly and go by fast. We will keep Grace in our prayers.

Anytime you need to vent you know we are all here for you. Also if

you ever just need to talk to someone you know that many of us would

take you up in an instant, anyone who ever needs to talk can feel

free to e-mail me for our telephone number.

Michele

Collin's story at http://www.geocities.com/chele323232

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Posted
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Hi ,

What you have been through has got to be more frustrating than anything else

you have ever experienced. I am so sorry to hear about your ordeal with

Grace's foot. You did everything that you could have done and I am sure that

any

one of us would have done the same thing you did. You are right, you saw the

best of the best when it comes to doctors. I don't think anything you could

have done or didn't do, could prevent you from being where you are right now.

You did all that YOU could. It is hard to listen to gut feelings when you

have more than one educated, experienced MD telling you otherwise. I do believe

she wore the DBB as prescribed, this is not your fault.

Dr. Frick is an EXCELLENT doctor. Although his advice/opinion was not

exactly desirable, you can bet he is being 100% honest, upfront and

understanding

about your feelings/situation. I trust him COMPLETELY when it comes to

Kaitlin's (or any baby's) clubfoot treatment.

It sounds like a lot of doctors that you saw were unsure, or else overly

hopeful about Grace's foot. I am sure (hopeful) that they had their reasons,

although that is not comforting to you at this moment. I am sorry that Grace

needs surgery, but glad that you found someone who will confront the problem

head-on and hopefully repair any damage and prevent any future damage.

Once again, I am sorry. I know that you are feeling so many emotions right

now. Atleast you have some real answers and an actual plan of ACTION.

Best of luck to you & Grace

Freeman

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Posted
Posted

,

I am sorry about your news today. Like you said, you have done

everything you have been told to, by the best and those that Dr. P

seems to trust as well. You have done your very best for Grace and

will continue to do that. We are here to support you and the

decision you make.

Louisa

6-27-99

Zoe 2-22-04 RCF FAB 16/7

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Jen,

So sorry to hear about your ongoing problems with Grace's feet. One thing that

jumps out at me is the rocker bottom part. When Rose was getting her casts

done, we didn't know about Ponseti, but her Dr. is, in my mind, a genuis. He

did several casts (5 or 6) and then he took xrays and he got out a model of the

foot and told us all about rocker bottom and how he didn't want to do anymore

correcting because he was afraid her would hurt her and rocker bottom comes from

the foot being torked on too much. He referred us to Dr. Mosca and that is when

we found out about Dr. Ponseti and the DBB and we went from there. I will be

eternally grateful that Rose's Dr knew when to quit.

Jen, you did everything right and you just have to remember that this is a birth

defect and it is a little different in each child. I'm sure the Dr.s did the

best they could do without doing surgery and now if she has to have surgery, it

will be okay.

I don't know where you live, but I would recommend Dr. Mosca at Children's

hospital in Seattle to anyone. He is a skilled surgeon who has been treating

club foot for 20+ years. He only switched to the Ponseti method 4 years ago.

If you are anywhere near Seattle or can get there, I would get an appointment

with him. Dr. Ponseti is the best in the world for correcting without surgery

but if she has to have surgery, get with one of the best surgeons who also

understands the Ponseti method. Dr. Mosca is the best in my book and I am sure

there are others too.

Good luck, Jen, to you and Grace and keep keeping us posted!

Robin & Rose

3/12/03

Right club foot

boothejennifer boothejennifer@...> wrote:

Here is my update on Graces appointment yesterday. For those that

are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

below knee casts for about 4 mos. followed by treatment w/Dr

whom is on Dr Ponsetis list of " certified " Drs. We were

unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

was 6/7 mos. She received 2 additional casts then a second tenotomy

was performed on her right achilles(first had been done too early;

before her feet were corrected) and a first was performed on the

left. Went home started braces 24/7 as advised. Had problems after

less than a month in them. Sent pics. to Iowa and were advised by

Dr. P. to go to night time only and to turn down the degrees of

rotation to about 55 due to very loose ligaments. So we did. We

continued to have issues with Graces feet and all along feelings

that something was just not right. To be honest her right foot

looked terrible......loose joints, late walking, foot dragging,

falling, then last year Rocker bottom. So now here I am a year later

back from seeing Dr Frick yesterday with news that Grace has had

rocker bottom for quit some time. Looking back at very early

pictures it appears that it was there all along for the last 2.5

years. Her heels have never came down. Xrays taken yesterday show

her right heel is way up from where it should be. Her left is up as

well, but not so much. Xrays taken last Jan. show rockerbottom too.

So pretty much she has been using only the front of her foot when

walking and mostly the middle which is why rockerbottom causes

a " breakdown " of the mid foot. So to make a long story and

appointment short she needs a posterior release for sure on the

right and possibley on the left as well. I was told also that Dr

Ponseti usually is not concerned w/rockerbottom and has advised Dr

Frick to " wait and see what happens as the child walks on it for a

while " . I was told that is probably what Dr P would advise me at

this time. But Dr Frick feels Graces foot would be unuseable later

in life if left like this. I feel this way too because I have had to

sit and watch it get worse over the past year and am quite honestly

upset I followed several Drs advice to do so. If at the age of 3 a

child is having major problems why would anyone think that this is

okay to leave alone?? I know so many of you here have listened to

me over the last two years post of my concerns and issues with

Grace. I have posted alot of pictures and got alot of " WOW "

something is definetly not right........and it just seems to me that

something should have been done by now. I am honestly a bit angry.

I did go to Drs that were recommended. I did what I was told. I

really feel like because Graces case was not the " norm " for the

Ponseti method people were afraid to do anything. It really hurts

that I see so many other babies with new problems and people are so

eager to find a solution or to invent new ways to help them. Maybe

I am over reacting but why was nothing done for MY child?

Dr Frick also feels Grace does not have cerebral palsy which for a

while was thought to be the cause of Graces foot dragging. So after

a very long phone consult. with a gait specialist Grace is to see in

Jan to determine why her foot is dragging I was told that because

Grace was forced to walk improperly she probably has alot of

symptoms that are resembling Cerebral palsy. Alot of CP children

toe walk because of achilles tightness. (tight achilles also causes

the heel to not drop which also causes rocker bottom) Toe walking is

undesirable because it causes hip problems, shortens the achilles

even more, causes shortened bones on the affected side, stiff joints

from constant muscle contraction (walk around on your toes all day

and see how your muscles feel.) Well not surprisingly Grace has all

of these problems and they are all getting worse. So I guess for

her case surgery cannot be avoided. Yes, we DID use the DBB

religously!! Yes we did exactly as told and we even saw the best.

So, I guess thats my update. Not really what I wanted to hear; but

definetly better than being told she is fine and to sit and wait and

see if things get better. It is what I kind of felt needed to be

said, but still hard to hear! There was no mention of trying a

couple casts to see if things could be corrected that way. So, Dr

Frick said for me to call him when I decide I want it done. I think

I will wait until after Christmas and on the brighter side at least

it is winter and the casts after surgery will help keep her legs

warm. And hopefully the surgery will not just help her feet

function better but everything.

and Grace

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Posted
Posted

,

I'm so sorry to hear that despite *your* best efforts, Grace will

need surgery. That is so disheartening to hear and I can totally

understand your frustration and anger.

All the best,

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

Hi ,

Dan and I are very sorry to hear about Grace's situation. We are thinking a

bit too about our own situation where Emma ended up needing the ATTT

surgery. I guess we're questioning how followup treatment is being done in

general. If primary treatment was in Iowa then maybe either return trips

there or at least sending X-rays would be a better way to go for those

parents here who are newer. Maybe sending pictures, even video is not

enough for those who feel that something is just not right.

Anyway, we'll always be wishing the best for Grace and hope this ordeal will

be over soon with good results. We've done the 6 week cast thing so feel

free to email us if you want to chat about it.

, Dan & Emma

bad news for Grace from Dr. Frick appt.

Here is my update on Graces appointment yesterday. For those that

are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

below knee casts for about 4 mos. followed by treatment w/Dr

whom is on Dr Ponsetis list of " certified " Drs. We were

unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

was 6/7 mos. She received 2 additional casts then a second tenotomy

was performed on her right achilles(first had been done too early;

before her feet were corrected) and a first was performed on the

left. Went home started braces 24/7 as advised. Had problems after

less than a month in them. Sent pics. to Iowa and were advised by

Dr. P. to go to night time only and to turn down the degrees of

rotation to about 55 due to very loose ligaments. So we did. We

continued to have issues with Graces feet and all along feelings

that something was just not right. To be honest her right foot

looked terrible......loose joints, late walking, foot dragging,

falling, then last year Rocker bottom. So now here I am a year later

back from seeing Dr Frick yesterday with news that Grace has had

rocker bottom for quit some time. Looking back at very early

pictures it appears that it was there all along for the last 2.5

years. Her heels have never came down. Xrays taken yesterday show

her right heel is way up from where it should be. Her left is up as

well, but not so much. Xrays taken last Jan. show rockerbottom too.

So pretty much she has been using only the front of her foot when

walking and mostly the middle which is why rockerbottom causes

a " breakdown " of the mid foot. So to make a long story and

appointment short she needs a posterior release for sure on the

right and possibley on the left as well. I was told also that Dr

Ponseti usually is not concerned w/rockerbottom and has advised Dr

Frick to " wait and see what happens as the child walks on it for a

while " . I was told that is probably what Dr P would advise me at

this time. But Dr Frick feels Graces foot would be unuseable later

in life if left like this. I feel this way too because I have had to

sit and watch it get worse over the past year and am quite honestly

upset I followed several Drs advice to do so. If at the age of 3 a

child is having major problems why would anyone think that this is

okay to leave alone?? I know so many of you here have listened to

me over the last two years post of my concerns and issues with

Grace. I have posted alot of pictures and got alot of " WOW "

something is definetly not right........and it just seems to me that

something should have been done by now. I am honestly a bit angry.

I did go to Drs that were recommended. I did what I was told. I

really feel like because Graces case was not the " norm " for the

Ponseti method people were afraid to do anything. It really hurts

that I see so many other babies with new problems and people are so

eager to find a solution or to invent new ways to help them. Maybe

I am over reacting but why was nothing done for MY child?

Dr Frick also feels Grace does not have cerebral palsy which for a

while was thought to be the cause of Graces foot dragging. So after

a very long phone consult. with a gait specialist Grace is to see in

Jan to determine why her foot is dragging I was told that because

Grace was forced to walk improperly she probably has alot of

symptoms that are resembling Cerebral palsy. Alot of CP children

toe walk because of achilles tightness. (tight achilles also causes

the heel to not drop which also causes rocker bottom) Toe walking is

undesirable because it causes hip problems, shortens the achilles

even more, causes shortened bones on the affected side, stiff joints

from constant muscle contraction (walk around on your toes all day

and see how your muscles feel.) Well not surprisingly Grace has all

of these problems and they are all getting worse. So I guess for

her case surgery cannot be avoided. Yes, we DID use the DBB

religously!! Yes we did exactly as told and we even saw the best.

So, I guess thats my update. Not really what I wanted to hear; but

definetly better than being told she is fine and to sit and wait and

see if things get better. It is what I kind of felt needed to be

said, but still hard to hear! There was no mention of trying a

couple casts to see if things could be corrected that way. So, Dr

Frick said for me to call him when I decide I want it done. I think

I will wait until after Christmas and on the brighter side at least

it is winter and the casts after surgery will help keep her legs

warm. And hopefully the surgery will not just help her feet

function better but everything.

and Grace

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Posted
Posted

,

I am so sorry that the news was not what you were hoping. Take heart that you

have done everything you possibly could to do what's best for Grace. I

understand your anger and wish that I had some sage advice. Unfortunately, the

best I can do is offer you my sympathy and a cyber hug.

Please keep us posted how things progress.

Jen & Livie

bad news for Grace from Dr. Frick appt.

Here is my update on Graces appointment yesterday. For those that

are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

below knee casts for about 4 mos. followed by treatment w/Dr

whom is on Dr Ponsetis list of " certified " Drs. We were

unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

was 6/7 mos. She received 2 additional casts then a second tenotomy

was performed on her right achilles(first had been done too early;

before her feet were corrected) and a first was performed on the

left. Went home started braces 24/7 as advised. Had problems after

less than a month in them. Sent pics. to Iowa and were advised by

Dr. P. to go to night time only and to turn down the degrees of

rotation to about 55 due to very loose ligaments. So we did. We

continued to have issues with Graces feet and all along feelings

that something was just not right. To be honest her right foot

looked terrible......loose joints, late walking, foot dragging,

falling, then last year Rocker bottom. So now here I am a year later

back from seeing Dr Frick yesterday with news that Grace has had

rocker bottom for quit some time. Looking back at very early

pictures it appears that it was there all along for the last 2.5

years. Her heels have never came down. Xrays taken yesterday show

her right heel is way up from where it should be. Her left is up as

well, but not so much. Xrays taken last Jan. show rockerbottom too.

So pretty much she has been using only the front of her foot when

walking and mostly the middle which is why rockerbottom causes

a " breakdown " of the mid foot. So to make a long story and

appointment short she needs a posterior release for sure on the

right and possibley on the left as well. I was told also that Dr

Ponseti usually is not concerned w/rockerbottom and has advised Dr

Frick to " wait and see what happens as the child walks on it for a

while " . I was told that is probably what Dr P would advise me at

this time. But Dr Frick feels Graces foot would be unuseable later

in life if left like this. I feel this way too because I have had to

sit and watch it get worse over the past year and am quite honestly

upset I followed several Drs advice to do so. If at the age of 3 a

child is having major problems why would anyone think that this is

okay to leave alone?? I know so many of you here have listened to

me over the last two years post of my concerns and issues with

Grace. I have posted alot of pictures and got alot of " WOW "

something is definetly not right........and it just seems to me that

something should have been done by now. I am honestly a bit angry.

I did go to Drs that were recommended. I did what I was told. I

really feel like because Graces case was not the " norm " for the

Ponseti method people were afraid to do anything. It really hurts

that I see so many other babies with new problems and people are so

eager to find a solution or to invent new ways to help them. Maybe

I am over reacting but why was nothing done for MY child?

Dr Frick also feels Grace does not have cerebral palsy which for a

while was thought to be the cause of Graces foot dragging. So after

a very long phone consult. with a gait specialist Grace is to see in

Jan to determine why her foot is dragging I was told that because

Grace was forced to walk improperly she probably has alot of

symptoms that are resembling Cerebral palsy. Alot of CP children

toe walk because of achilles tightness. (tight achilles also causes

the heel to not drop which also causes rocker bottom) Toe walking is

undesirable because it causes hip problems, shortens the achilles

even more, causes shortened bones on the affected side, stiff joints

from constant muscle contraction (walk around on your toes all day

and see how your muscles feel.) Well not surprisingly Grace has all

of these problems and they are all getting worse. So I guess for

her case surgery cannot be avoided. Yes, we DID use the DBB

religously!! Yes we did exactly as told and we even saw the best.

So, I guess thats my update. Not really what I wanted to hear; but

definetly better than being told she is fine and to sit and wait and

see if things get better. It is what I kind of felt needed to be

said, but still hard to hear! There was no mention of trying a

couple casts to see if things could be corrected that way. So, Dr

Frick said for me to call him when I decide I want it done. I think

I will wait until after Christmas and on the brighter side at least

it is winter and the casts after surgery will help keep her legs

warm. And hopefully the surgery will not just help her feet

function better but everything.

and Grace

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Posted
Posted

Club footed or not I notice a lot of little kids walk on their toes. I always

did myself and know others. I wonder really if this could or would lead to a

relapse in cf babies?

s.

Re: bad news for Grace from Dr. Frick appt.

Oh wow , what a difficult thing for you and Grace to have to go

through. I don't know what to say because I have no idea about all

this. I would be angry too. Have you consulted with Dr. P. about

this? Is he one of the docs that has said wait and see? And have you

talked to him about this situation and Dr. Frick's plan yet? I'm curious

what he would say, perhaps he wouldn't say wait and see and agree with Dr.

Frick? Did Dr. Frick say a cast or two wouldn't do anything or is it worth

a try? Could it be a bad thing to cast? I'm just asking, because I have

no idea how this all works.

I found your information about toe walking interesting because my oldest

does this a lot. I remind him to heel toe it all the time but he walks on

his toes whenever I'm not telling him to be conscious of it. He doesn't

have any orthopaedic problems which would cause him to do this so I'm

hoping it works itself out but I didn't know it could cause other problems

either. Food for thought... thanks.

Kori

At 08:43 AM 12/1/2004, you wrote:

>Here is my update on Graces appointment yesterday. For those that

>are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

>below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

>unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

>was 6/7 mos. She received 2 additional casts then a second tenotomy

>was performed on her right achilles(first had been done too early;

>before her feet were corrected) and a first was performed on the

>left. Went home started braces 24/7 as advised. Had problems after

>less than a month in them. Sent pics. to Iowa and were advised by

>Dr. P. to go to night time only and to turn down the degrees of

>rotation to about 55 due to very loose ligaments. So we did. We

>continued to have issues with Graces feet and all along feelings

>that something was just not right. To be honest her right foot

>looked terrible......loose joints, late walking, foot dragging,

>falling, then last year Rocker bottom. So now here I am a year later

>back from seeing Dr Frick yesterday with news that Grace has had

>rocker bottom for quit some time. Looking back at very early

>pictures it appears that it was there all along for the last 2.5

>years. Her heels have never came down. Xrays taken yesterday show

>her right heel is way up from where it should be. Her left is up as

>well, but not so much. Xrays taken last Jan. show rockerbottom too.

>So pretty much she has been using only the front of her foot when

>walking and mostly the middle which is why rockerbottom causes

>a " breakdown " of the mid foot. So to make a long story and

>appointment short she needs a posterior release for sure on the

>right and possibley on the left as well. I was told also that Dr

>Ponseti usually is not concerned w/rockerbottom and has advised Dr

>Frick to " wait and see what happens as the child walks on it for a

>while " . I was told that is probably what Dr P would advise me at

>this time. But Dr Frick feels Graces foot would be unuseable later

>in life if left like this. I feel this way too because I have had to

>sit and watch it get worse over the past year and am quite honestly

>upset I followed several Drs advice to do so. If at the age of 3 a

>child is having major problems why would anyone think that this is

>okay to leave alone?? I know so many of you here have listened to

>me over the last two years post of my concerns and issues with

>Grace. I have posted alot of pictures and got alot of " WOW "

>something is definetly not right........and it just seems to me that

>something should have been done by now. I am honestly a bit angry.

>I did go to Drs that were recommended. I did what I was told. I

>really feel like because Graces case was not the " norm " for the

>Ponseti method people were afraid to do anything. It really hurts

>that I see so many other babies with new problems and people are so

>eager to find a solution or to invent new ways to help them. Maybe

>I am over reacting but why was nothing done for MY child?

>Dr Frick also feels Grace does not have cerebral palsy which for a

>while was thought to be the cause of Graces foot dragging. So after

>a very long phone consult. with a gait specialist Grace is to see in

>Jan to determine why her foot is dragging I was told that because

>Grace was forced to walk improperly she probably has alot of

>symptoms that are resembling Cerebral palsy. Alot of CP children

>toe walk because of achilles tightness. (tight achilles also causes

>the heel to not drop which also causes rocker bottom) Toe walking is

>undesirable because it causes hip problems, shortens the achilles

>even more, causes shortened bones on the affected side, stiff joints

>from constant muscle contraction (walk around on your toes all day

>and see how your muscles feel.) Well not surprisingly Grace has all

>of these problems and they are all getting worse. So I guess for

>her case surgery cannot be avoided. Yes, we DID use the DBB

>religously!! Yes we did exactly as told and we even saw the best.

>So, I guess thats my update. Not really what I wanted to hear; but

>definetly better than being told she is fine and to sit and wait and

>see if things get better. It is what I kind of felt needed to be

>said, but still hard to hear! There was no mention of trying a

>couple casts to see if things could be corrected that way. So, Dr

>Frick said for me to call him when I decide I want it done. I think

>I will wait until after Christmas and on the brighter side at least

>it is winter and the casts after surgery will help keep her legs

>warm. And hopefully the surgery will not just help her feet

>function better but everything.

> and Grace

>

>

>

>

>

>

>

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Posted
Posted

Club footed or not I notice a lot of little kids walk on their toes. I always

did myself and know others. I wonder really if this could or would lead to a

relapse in cf babies?

s.

Re: bad news for Grace from Dr. Frick appt.

Oh wow , what a difficult thing for you and Grace to have to go

through. I don't know what to say because I have no idea about all

this. I would be angry too. Have you consulted with Dr. P. about

this? Is he one of the docs that has said wait and see? And have you

talked to him about this situation and Dr. Frick's plan yet? I'm curious

what he would say, perhaps he wouldn't say wait and see and agree with Dr.

Frick? Did Dr. Frick say a cast or two wouldn't do anything or is it worth

a try? Could it be a bad thing to cast? I'm just asking, because I have

no idea how this all works.

I found your information about toe walking interesting because my oldest

does this a lot. I remind him to heel toe it all the time but he walks on

his toes whenever I'm not telling him to be conscious of it. He doesn't

have any orthopaedic problems which would cause him to do this so I'm

hoping it works itself out but I didn't know it could cause other problems

either. Food for thought... thanks.

Kori

At 08:43 AM 12/1/2004, you wrote:

>Here is my update on Graces appointment yesterday. For those that

>are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

>below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

>unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

>was 6/7 mos. She received 2 additional casts then a second tenotomy

>was performed on her right achilles(first had been done too early;

>before her feet were corrected) and a first was performed on the

>left. Went home started braces 24/7 as advised. Had problems after

>less than a month in them. Sent pics. to Iowa and were advised by

>Dr. P. to go to night time only and to turn down the degrees of

>rotation to about 55 due to very loose ligaments. So we did. We

>continued to have issues with Graces feet and all along feelings

>that something was just not right. To be honest her right foot

>looked terrible......loose joints, late walking, foot dragging,

>falling, then last year Rocker bottom. So now here I am a year later

>back from seeing Dr Frick yesterday with news that Grace has had

>rocker bottom for quit some time. Looking back at very early

>pictures it appears that it was there all along for the last 2.5

>years. Her heels have never came down. Xrays taken yesterday show

>her right heel is way up from where it should be. Her left is up as

>well, but not so much. Xrays taken last Jan. show rockerbottom too.

>So pretty much she has been using only the front of her foot when

>walking and mostly the middle which is why rockerbottom causes

>a " breakdown " of the mid foot. So to make a long story and

>appointment short she needs a posterior release for sure on the

>right and possibley on the left as well. I was told also that Dr

>Ponseti usually is not concerned w/rockerbottom and has advised Dr

>Frick to " wait and see what happens as the child walks on it for a

>while " . I was told that is probably what Dr P would advise me at

>this time. But Dr Frick feels Graces foot would be unuseable later

>in life if left like this. I feel this way too because I have had to

>sit and watch it get worse over the past year and am quite honestly

>upset I followed several Drs advice to do so. If at the age of 3 a

>child is having major problems why would anyone think that this is

>okay to leave alone?? I know so many of you here have listened to

>me over the last two years post of my concerns and issues with

>Grace. I have posted alot of pictures and got alot of " WOW "

>something is definetly not right........and it just seems to me that

>something should have been done by now. I am honestly a bit angry.

>I did go to Drs that were recommended. I did what I was told. I

>really feel like because Graces case was not the " norm " for the

>Ponseti method people were afraid to do anything. It really hurts

>that I see so many other babies with new problems and people are so

>eager to find a solution or to invent new ways to help them. Maybe

>I am over reacting but why was nothing done for MY child?

>Dr Frick also feels Grace does not have cerebral palsy which for a

>while was thought to be the cause of Graces foot dragging. So after

>a very long phone consult. with a gait specialist Grace is to see in

>Jan to determine why her foot is dragging I was told that because

>Grace was forced to walk improperly she probably has alot of

>symptoms that are resembling Cerebral palsy. Alot of CP children

>toe walk because of achilles tightness. (tight achilles also causes

>the heel to not drop which also causes rocker bottom) Toe walking is

>undesirable because it causes hip problems, shortens the achilles

>even more, causes shortened bones on the affected side, stiff joints

>from constant muscle contraction (walk around on your toes all day

>and see how your muscles feel.) Well not surprisingly Grace has all

>of these problems and they are all getting worse. So I guess for

>her case surgery cannot be avoided. Yes, we DID use the DBB

>religously!! Yes we did exactly as told and we even saw the best.

>So, I guess thats my update. Not really what I wanted to hear; but

>definetly better than being told she is fine and to sit and wait and

>see if things get better. It is what I kind of felt needed to be

>said, but still hard to hear! There was no mention of trying a

>couple casts to see if things could be corrected that way. So, Dr

>Frick said for me to call him when I decide I want it done. I think

>I will wait until after Christmas and on the brighter side at least

>it is winter and the casts after surgery will help keep her legs

>warm. And hopefully the surgery will not just help her feet

>function better but everything.

> and Grace

>

>

>

>

>

>

>

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Posted
Posted

Aw Jen, I'm so sorry for you honey.

Re: bad news for Grace from Dr. Frick appt.

I am very sorry to hear the disappointing news, but atleast you can

be thankful that now you know what needs to be done and you can do

it. I think that is half the battle, knowing what to do. You know,

I think we all trust the doctors to do what is best for our

children. We all believe (to some extent) what they tell us and

think that they know what they are talking about. We are in a

similar situation (a relapse) with Jordan's feet and I know how you

feel. I guess that we will be casts together this winter.

(Jordan's appointment with Dr. Frick is Monday.) I can't blame you

for being pissed. I would be too. You're a mommy and that's your

job. Just know that atleast now you can work towards correcting her

feet and providing her with the best feet and life that you can

possibly provide. You are a good mommy!! Grace is lucky to have

you. Good Luck!

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday

show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom

too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable

later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite

honestly

> upset I followed several Drs advice to do so. If at the age of 3

a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are

so

> eager to find a solution or to invent new ways to help them.

Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also

causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear;

but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at

least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

Aw Jen, I'm so sorry for you honey.

Re: bad news for Grace from Dr. Frick appt.

I am very sorry to hear the disappointing news, but atleast you can

be thankful that now you know what needs to be done and you can do

it. I think that is half the battle, knowing what to do. You know,

I think we all trust the doctors to do what is best for our

children. We all believe (to some extent) what they tell us and

think that they know what they are talking about. We are in a

similar situation (a relapse) with Jordan's feet and I know how you

feel. I guess that we will be casts together this winter.

(Jordan's appointment with Dr. Frick is Monday.) I can't blame you

for being pissed. I would be too. You're a mommy and that's your

job. Just know that atleast now you can work towards correcting her

feet and providing her with the best feet and life that you can

possibly provide. You are a good mommy!! Grace is lucky to have

you. Good Luck!

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday

show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom

too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable

later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite

honestly

> upset I followed several Drs advice to do so. If at the age of 3

a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are

so

> eager to find a solution or to invent new ways to help them.

Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also

causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear;

but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at

least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

-

My heart aches for you as I know how upset and disappointed you must be

right now. I'm so sorry you did not get the outcome that we all hope for.

I'm hoping Charity Ballinger or Egbert read your posts and can

connect you with Annika's parents. I believe Annika is close to 5 now and

her mom's name escapes me, but Annika also has the rockerbottom issue. At

least she did last year. She sees Dr. Colburn in Pleasanton who also

suggested surgery for this, but they flew back to Ponseti and he disagreed,

so they had decided to take the wait and see approach. I know last year she

had a dorsiflexion of 0 degrees and were hoping it didn't get worse. I

think talking with someone else who was/is in the same boat might help. I

wish I knew her contact info but I don't. I know and Charity do

though. I'll be thinking of your and Grace. Keep us Posted!

> bad news for Grace from Dr. Frick appt.

>

>

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me that

> something should have been done by now. I am honestly a bit angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So after

> a very long phone consult. with a gait specialist Grace is to see in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

>

>

>

>

>

>

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Posted
Posted

,

You are such a good mommy! You have tried so hard to get the best

treatment for your little Grace! I am also disheartened to hear your

news and feel for you! I would definately be frustrated and pissed as

well, the wait and see is probably getting a bit old. But on the

brighter side, they are saying that it looks like she doesn't have

CP, that is very very good news!

We are all here for you!!!

& Grace (love your daughters name by the way!)

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

,

I just wanted to add my sympathy for your bad news. Doctors are only

human, as prone to mistakes as the rest of us. Of course, that doesn't

help when your child is suffering because of it. I can't imagine the

feelings you're having right now, but like everyone else said, we're

all here for you! I for one can't wait to hear the GOOD news posts

you'll be putting up in a few weeks!

, mommy of:

Guinevere, on, Ava 8/4/04 right CF DBB 23/7

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me that

> something should have been done by now. I am honestly a bit angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So after

> a very long phone consult. with a gait specialist Grace is to see in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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Posted
Posted

,

I too am very sorry to hear your news. I would wait and get through

the holidays also. You confirm the saying " mothers intuition " (sp?)

KK

>

> Here is my update on Graces appointment yesterday. For those that

> are newer; Grace is 3 yrs. 3 mos. She began treatment at birth

with

> below knee casts for about 4 mos. followed by treatment w/Dr

> whom is on Dr Ponsetis list of " certified " Drs. We were

> unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

> was 6/7 mos. She received 2 additional casts then a second

tenotomy

> was performed on her right achilles(first had been done too early;

> before her feet were corrected) and a first was performed on the

> left. Went home started braces 24/7 as advised. Had problems

after

> less than a month in them. Sent pics. to Iowa and were advised by

> Dr. P. to go to night time only and to turn down the degrees of

> rotation to about 55 due to very loose ligaments. So we did. We

> continued to have issues with Graces feet and all along feelings

> that something was just not right. To be honest her right foot

> looked terrible......loose joints, late walking, foot dragging,

> falling, then last year Rocker bottom. So now here I am a year

later

> back from seeing Dr Frick yesterday with news that Grace has had

> rocker bottom for quit some time. Looking back at very early

> pictures it appears that it was there all along for the last 2.5

> years. Her heels have never came down. Xrays taken yesterday show

> her right heel is way up from where it should be. Her left is up

as

> well, but not so much. Xrays taken last Jan. show rockerbottom too.

> So pretty much she has been using only the front of her foot when

> walking and mostly the middle which is why rockerbottom causes

> a " breakdown " of the mid foot. So to make a long story and

> appointment short she needs a posterior release for sure on the

> right and possibley on the left as well. I was told also that Dr

> Ponseti usually is not concerned w/rockerbottom and has advised Dr

> Frick to " wait and see what happens as the child walks on it for a

> while " . I was told that is probably what Dr P would advise me at

> this time. But Dr Frick feels Graces foot would be unuseable later

> in life if left like this. I feel this way too because I have had

to

> sit and watch it get worse over the past year and am quite honestly

> upset I followed several Drs advice to do so. If at the age of 3 a

> child is having major problems why would anyone think that this is

> okay to leave alone?? I know so many of you here have listened to

> me over the last two years post of my concerns and issues with

> Grace. I have posted alot of pictures and got alot of " WOW "

> something is definetly not right........and it just seems to me

that

> something should have been done by now. I am honestly a bit

angry.

> I did go to Drs that were recommended. I did what I was told. I

> really feel like because Graces case was not the " norm " for the

> Ponseti method people were afraid to do anything. It really hurts

> that I see so many other babies with new problems and people are so

> eager to find a solution or to invent new ways to help them. Maybe

> I am over reacting but why was nothing done for MY child?

> Dr Frick also feels Grace does not have cerebral palsy which for a

> while was thought to be the cause of Graces foot dragging. So

after

> a very long phone consult. with a gait specialist Grace is to see

in

> Jan to determine why her foot is dragging I was told that because

> Grace was forced to walk improperly she probably has alot of

> symptoms that are resembling Cerebral palsy. Alot of CP children

> toe walk because of achilles tightness. (tight achilles also causes

> the heel to not drop which also causes rocker bottom) Toe walking

is

> undesirable because it causes hip problems, shortens the achilles

> even more, causes shortened bones on the affected side, stiff

joints

> from constant muscle contraction (walk around on your toes all day

> and see how your muscles feel.) Well not surprisingly Grace has

all

> of these problems and they are all getting worse. So I guess for

> her case surgery cannot be avoided. Yes, we DID use the DBB

> religously!! Yes we did exactly as told and we even saw the

best.

> So, I guess thats my update. Not really what I wanted to hear; but

> definetly better than being told she is fine and to sit and wait

and

> see if things get better. It is what I kind of felt needed to be

> said, but still hard to hear! There was no mention of trying a

> couple casts to see if things could be corrected that way. So, Dr

> Frick said for me to call him when I decide I want it done. I

think

> I will wait until after Christmas and on the brighter side at least

> it is winter and the casts after surgery will help keep her legs

> warm. And hopefully the surgery will not just help her feet

> function better but everything.

> and Grace

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